Leaving Town

I wanted to let you all know that we will be leaving town tomorrow morning until Wednesday night. We are taking Will and Caroline on a surprise trip to Disney to celebrate Caroline's 4th birthday a little early. We haven't told Caroline anything, she doesn't even know we are going anywhere (you would think that the suitcases in my room would give it away, but she hasn't asked anything about it). Caroline is really into the princesses right now and Josh and I wanted to do something really special for her. She doesn't even know that DisneyWorld exsists and we are not going to tell her anything until we are walking up to the castle. She is seriously going to flip. On Tuesday morning we are going to be having breakfast with Cinderella (along with about 100 other people) at the castle. We have told them that we are celebrating her birthday and they are going to send out a birthday cake and everything. I have also done some secret shopping and purchased some things that we have wrapped and are going to have the hotel send up to our room with a card that says it is from the Princesses. Again, flipping! Josh and I are really looking forward to the trip and can't wait to see her face when she is face to face with Cinderella! Priceless! I am going to be taking TONS of pictures!
Also while we are there we are going to be meeting up with another family with a RTS child. Kristi (the mom) and I have communicated via e-mail through an RTS listserv online for almost a year now. They live in Jacksonville, FL and are going to drive to Orlando for a night and have dinner with us. I am also going to be taking TONS of pictures of Noah and Will. Noah is 10 months old so Kristi and I joined the listserv at about the same time. We are really excited about meeting their family.
I will post new pictures when we get home and let you all know about the fabulous time that we had! Oh, in case you were wondering, I am packing extra underware for Caroline because I believe that she could possibly pee her pants! Love ya!
Oh, I almost forgot...WE HAD POOP!!! Will pooped TWICE (you read that right!!) yesterday! I think that the benefiber may be working! Thanks for the prayers and keep praying, it works!

Blue Man Group?

I have to tell you all what Will did today. He was being really quiet so I thought that he might be getting into something, I thought I would probably find him eating the dog food, AGAIN! I walked into the kitchen and said his name and he looked at me with the face you see in the picture! I about fell out laughing, it was soooo cute. He had gotten into Caroline's markers that she left on the floor. He got the cap off and put it in his mouth so now he is sporting the blue mustache! When I asked him what he was doing he gave me that great smile! He knew he had found a find! LOL!
Thought that I would share his great smile to start off a great weekend!

Praying for Poop

So, we have be doing Milk of Mag. and benafiber like crazy all week with only little to show for it. I hope that it starts working soon, Will is miserable. I have tried the glycerian supp. and nothing happened. I don't think that is normal, but seriously nothing happened.

He is also teething. I think that he is working on several teeth. So he has not been too happy about that either. Motrin seems to be helping him with the pain. He can't do anything easily!

We are going to meet Caroline's preschool teacher today. They are having an open house so that the kids can meet their teacher and see their classroom. Her teacher's name is Ms. Abby and Caroline is really excited to meet her. School starts next week!

Keep praying for poop!

Catching you up

Well, Josh, William and I have had several LONG nights in a row. He has been waking up several times a night in crying fits and there is nothing that Josh and I can do. I gave him some Milk of Mag. this morning because I think that he is constipated. I hope that he gets some relief soon, I feel bad for the little guy. We are giving him Benefiber everyday but I guess the extra formula in his bottles are making a difference in his going and/or not going.

The granulated tissue is not getting any better either. I am going to have to use some of the silver nitrate on it, but I am going to wait until Josh gets home from work so that he can help me to hold him still. Wish me luck!

He also woke up this morning with a rash all over his tummy too. I am not sure what it is from we have not given him anything new to eat. So I am not sure...I am just going to keep my eye on it and see what it does.

Grrr...pray for poop, again!

Doctor Visits

Ok, so Caroline didn't do that great with the whole shot thing but we all survived. She had to get one and Will had to get three. Caroline got hers first and thought about holding Will's hand when he got his but then said..."I can't look!!" and stood behind the nurse.

You might see the kids in some Cardinal Glennon publications! There was a lady there taking pictures of the doctors and nurses interacting with the kids. Dr. Rahman's office is not at Cardinal Glennon but they are in the same SSM group. Caroline and Will had their picture taken with Dr. Rahman, it was really cute!

Yesterdays visit with Dr. Brady could not have gone any better! Josh and I both really liked her. She first asked us what we came in for and I told her that we wanted a plan for Will's feeding and weight gain, she said okay and gave us one!

We are going to add a half a scoop more of formula to each of his bottles a day (to add more calories). So instead of 2 scoops per four ounces as the label says, we are going to add 2 1/2 scoops to the four ounces. We are also going to start giving him Benafiber (2 teaspoons a day) to help with the constipation issue.

We have to take Will in for a weight check in two weeks to see if the adding the half scoop is indeed adding weight to him. I am just going to take him into Dr. Rahman's office and they are going to fax his weight to Dr. Brady so that I don't have to drive all the way to St. John's.

Most babies stop drinking formula when they turn a year old, but Dr. Brady said that Will should be on formula until he is at least 16 months old. At that time she is going to consider starting him on whole milk, but right now he needs the vitamins and minerals that are in the formula.

Dr. Brady was wonderful! Josh and I left the appointment feeling great, like we had accomplished something! First time EVER!!! She said that she doesn't need to see him back for 6 months. If he is gaining weight like he should then all should be good. Yippie!

Today we are staying home and cleaning house, that housekeeper still hasn't shown up! LOL!

Boy, we have a busy week!!

Yesterday we went to Cardinal Glennon to surgery clinic for our third round of silver nitrate. They sent me home with a bag full of the silver nitrate sticks and told me to do it every 3-4 days until it is all gone. Yippie! Also learned that Will's wonderful sergeon, Dr. Coln is moving to St. John's Hospital. Normally I would be so sad about this but we are going to be a St. John's for GI, so I have no problem seeing Dr. Coln there too!! We are going to take Will to see Dr. Linda Brady, new GI doctor, at St. John's. We have heard nothing but wonderful things about Dr. Brady and are really excited to meet her. And since Dr. Coln put in the g-tube we will be able to see both Doctors together if need be at St. John's.

Ok, back to the busy week...Today I have to take both kids to see Dr. Rahman (pedi.) Both Kiddos are due for a well baby visit and both kiddos are due for some shots! Yippie! I am not so much worried about Will, but Caroline is a whole other story! I literally had to sit on her to hold her still to get a splinter out of her foot. She was screaming her head off and out of control. So, a nurse coming at her with some needles should be interesting. But she has to have a physical before school starts, so I don't see us leaving the doctor's office without some shots.

Tomorrow is our appointment with Dr. Brady!! I can't wait! Never have I been this excited about a GI appointment. But I have heard so many great things about her, I really feel that we may walk away from this appointment with a feeding plan. I am so upset with the GI doctors at CG! They put the g-tube in and we haven't heard anything from them since!! How crazy is that! Not a follow up appointment, not a call, not a nothing! Now you know why we are going to St. John's! Anyway, I will let you all know how the appointment goes...

Aunt Leslie and Mikkah are also coming to visit today! We can't wait! Will also has a therapy appointment this afternoon when we get home from the doctor appointment (come to think of it, I might just cancel that one). Tomorrow we have a playdate at Avery's and Ms. Susie's house before the doctor appointment. Did I mention that we are busy! LOL!!

I will let you all know how the appointments go...You may be able to hear Caroline scream if you are outside around 1pm today! Poor little girl! Talk to you all soon...

((Hugs))

Happy Birthday William!!!

Today my little man turns 1 year old, I can hardly believe it. What a year it has been...
Diagnosed with RTS at 9 days old, on that day going through several ultrasounds, eeg, a skeletal survey and many needle pricks. He has had 3 surgeries this past year (tethered spinal cord release, malrotation of the intestine, and g-tube placement) and 5 hospital stays (I think). We have been to the pediatrician more times then I could even count (I am sure that our insurance would be able to give an accurate count!) and many specialists. Will has therapy sessions every week that he has been doing since he was 2 months old. His favorite toy is Caroline! He LOVES to put everything in his mouth. He loves music and bouncing (he is a Tiger at heart!) He is cruising the furniture and crawls really fast! He also loves to get into the kitchen cabinets and eat the dog food. He sits here this morning smiling from ear to ear.
My little man is the strongest guy that I know, he has been through so much yet is the happiest child I have ever seen. He lights up the room. I am absolutely blessed and honored that God chose me to be William's mommy.
I wanted to thank all of you, our family and friends who have given us your prayers and thoughts during this past year. Without all of you I am not sure how Josh and I would have made it through. Thank you from the bottom of our hearts, we love you all and appriaciate all that you have done for us and our family. We can not thank you all enough.
Everyone have a piece of birthday cake today and celebrate William's birthday! Much love to you all!

We had a birthday party for Will, Lil' Buckaroo themed. Will was the sheriff! Here is a picture of him with his birthday cupcake, he didn't really care for it.

Here is a picture of the kids after the pinata was broken open. They all walked away with tons of loot! The party was a success and everyone had a great time. Happy First Birthday William!